Comments on: Scientists Say Chronic Lyme Disease Is Not Real http://lymeadvocate.com/scientists-say-chronic-lyme-disease-is-not-real/ News and Support for People with Lyme Disease Sat, 17 May 2008 18:04:30 +0000 http://wordpress.org/?v=2.2.1 By: Donald http://lymeadvocate.com/scientists-say-chronic-lyme-disease-is-not-real/#comment-157 Donald Tue, 04 Mar 2008 17:54:37 +0000 http://lymeadvocate.com/scientists-say-chronic-lyme-disease-is-not-real/#comment-157 Hello, Lyme is real. I was totally strong and healthy at 30 years old. 2 weeks After bitten and have the bulls eye rash my life was never the same. Most if not all doctors will not address lyme and blow it off as myth. I now have severe authoritis and am on dissability. At present I am doing absolutly nothing for the lyme. The doctores all say it is reumatiod arteritis so that is what is beig treated. Thanks for the chance to put in my 2 cents. Hello, Lyme is real. I was totally strong and healthy at 30 years old. 2 weeks After bitten and have the bulls eye rash my life was never the same. Most if not all doctors will not address lyme and blow it off as myth. I now have severe authoritis and am on dissability. At present I am doing absolutly nothing for the lyme. The doctores all say it is reumatiod arteritis so that is what is beig treated. Thanks for the chance to put in my 2 cents.

]]> By: admin http://lymeadvocate.com/scientists-say-chronic-lyme-disease-is-not-real/#comment-92 admin Tue, 13 Nov 2007 17:40:31 +0000 http://lymeadvocate.com/scientists-say-chronic-lyme-disease-is-not-real/#comment-92 Carol, I really feel for you. I have some of the same problems with memory, hand pain, etc. I was telling my mom yesterday that it makes me feel like Polyanna (the little girl who always found good things about stuff) to say this, but I did discover a good thing about Lyme. My allergies are much less of a problem what with my immune system not functioning as well. I can sleep with my cat now and I barely had any fall allergy problems. Carol,
I really feel for you. I have some of the same problems with memory, hand pain, etc. I was telling my mom yesterday that it makes me feel like Polyanna (the little girl who always found good things about stuff) to say this, but I did discover a good thing about Lyme. My allergies are much less of a problem what with my immune system not functioning as well. I can sleep with my cat now and I barely had any fall allergy problems.

]]> By: Carol http://lymeadvocate.com/scientists-say-chronic-lyme-disease-is-not-real/#comment-89 Carol Mon, 12 Nov 2007 19:15:55 +0000 http://lymeadvocate.com/scientists-say-chronic-lyme-disease-is-not-real/#comment-89 I was on Rocephin IV for 6 months, lost my gallbladder, gained a hiatal hernia, but killed the Lyme. 2 years later, I still have Lyme cycles, so there's no way there's no such thing as Post Lyme Syndrome. The doctors simply don't know how to test for it, or how to treat it so they say it doesn't exist. I was relatively healthy pre-Lyme, now I can hardly function, altho some months are better than others. When I'm in a cycle, I have insomnia, my hands hurt, I lose all motivation and energy, I am again disoriented, and have mild demential sxs (I am 56 and was a practicing psychotherapist before Lyme...) I reverse numbers, have short term memory problems, get lost driving, start to get depressed...and then the cycle abates and most of those get better for a while, and I'm functional. Definitely a syndrome. Going to try the VCS/cholestyramine tx by Dr. Shoemaker next, since it's clear antibiotics don't work for this. Any info on Post Lyme appreciated. Thanks. I was on Rocephin IV for 6 months, lost my gallbladder, gained a hiatal hernia, but killed the Lyme. 2 years later, I still have Lyme cycles, so there’s no way there’s no such thing as Post Lyme Syndrome. The doctors simply don’t know how to test for it, or how to treat it so they say it doesn’t exist. I was relatively healthy pre-Lyme, now I can hardly function, altho some months are better than others. When I’m in a cycle, I have insomnia, my hands hurt, I lose all motivation and energy, I am again disoriented, and have mild demential sxs (I am 56 and was a practicing psychotherapist before Lyme…) I reverse numbers, have short term memory problems, get lost driving, start to get depressed…and then the cycle abates and most of those get better for a while, and I’m functional. Definitely a syndrome. Going to try the VCS/cholestyramine tx by Dr. Shoemaker next, since it’s clear antibiotics don’t work for this. Any info on Post Lyme appreciated. Thanks.

]]> By: admin http://lymeadvocate.com/scientists-say-chronic-lyme-disease-is-not-real/#comment-83 admin Fri, 02 Nov 2007 02:01:24 +0000 http://lymeadvocate.com/scientists-say-chronic-lyme-disease-is-not-real/#comment-83 Drew, My doctor is willing to try things, she just doesn't know what to try. We've been looking at all the research and so much of it is conflicting. I'll keep an eye on your blog and I hope you begin to improve soon. Drew,
My doctor is willing to try things, she just doesn’t know what to try. We’ve been looking at all the research and so much of it is conflicting. I’ll keep an eye on your blog and I hope you begin to improve soon.

]]> By: Drew http://lymeadvocate.com/scientists-say-chronic-lyme-disease-is-not-real/#comment-81 Drew Fri, 02 Nov 2007 01:38:50 +0000 http://lymeadvocate.com/scientists-say-chronic-lyme-disease-is-not-real/#comment-81 Hi! Nice to find your blog online. I recently started treatment myself. Just woke up from a fantastic Herx induced coma I used to call a nap. I started a blog on the issue myself and am logging my progress. I will tap into yours to see how you are doing as well. Here's the scoop with the chronic Lyme semantics. Before EM, Drew felt awake enough to do yardwork and go for walks with the kids. A few months after EM, Drew can barely walk in the evening sometimes and hits a wall of exhaustion at 2 pm. So yes, who cares what you call it, jsut don't tell me that I have something that I do not after I am positive that none of this was ever a remote problem with my perfectly healthy self before ... the rash! But I am not bitter at my PCP... :-) Hi!

Nice to find your blog online. I recently started treatment myself. Just woke up from a fantastic Herx induced coma I used to call a nap. I started a blog on the issue myself and am logging my progress. I will tap into yours to see how you are doing as well.

Here’s the scoop with the chronic Lyme semantics. Before EM, Drew felt awake enough to do yardwork and go for walks with the kids. A few months after EM, Drew can barely walk in the evening sometimes and hits a wall of exhaustion at 2 pm.

So yes, who cares what you call it, jsut don’t tell me that I have something that I do not after I am positive that none of this was ever a remote problem with my perfectly healthy self before … the rash!

But I am not bitter at my PCP… :-)

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